The potential of Dementia Care Mapping as a practice development tool for occupational therapists in South Africa

YesThe quality of care for persons living with dementia in institutional care settings is of global concern. The provision of person-centred care (PCC) for people with dementia is internationally recognised as best practice, which promotes possibilities for people with dementia to experience well-being. However, there remains a lack of evidence of approaches that can help to support delivery of PCC for older people with dementia in long-term care, in South Africa. Dementia Care Mapping (DCM) is a successful practice development tool, originating in the UK, used for supporting the implementation of PCC. However, to date it has not been considered for use by South African occupational therapists working in residential care facilities. This article defines the components of the DCM tool, its process of use and potential outcomes for care practice. In an attempt to scrutinise the value of findings from an occupational therapy perspective, the Kawa Model is drawn upon to explain how the data from DCM can be interpreted. The Kawa Model provides a strong focus on how a sense of being is promoted by a person's context, and is an established vehicle to aid understanding of the potential for application of PCC in South African care facilities

See me, not just the dementia - Understanding people's experiences of living in a care home.

yesThis report looks at the experiences of people with dementia living in care homes in England, with a particular focus on whether their care offers dignity and respect. Most similar studies have relied on the views of carers, care staff and people in the early stages of dementia. This study examines directly the experiences of people including those with advanced dementia

Researchers' experiences of the design and conduct challenges associated with parallel-group cluster-randomised trials and views on a novel open-cohort design

BACKGROUND: Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time. An 'open-cohort' design allows individual follow-up with recruitment before and after cluster-randomisation, but little literature exists on acceptability to inform their use in CRTs. AIM: To document the views and experiences of expert trialists to identify: a) Design and conduct challenges with established parallel-group CRT designs,b) Perceptions of potential benefits and barriers to implementation of open-cohort CRTs,c) Methods for minimising, and investigating the impact of, bias in open-cohort CRTs. METHODS: Qualitative consultation via two expert workshops including triallists (n = 24) who had worked on CRTs over a range of settings. Workshop transcripts were analysed using Descriptive Thematic Analysis utilising inductive and deductive coding. RESULTS: Two central organising concepts were developed. Design and conduct challenges with established CRT designs confirmed that current CRT designs are unable to deal with many of the complex research and intervention circumstances found in some trial settings (e.g. care homes). Perceptions of potential benefits and barriers of open cohort designs included themes on: approaches to recruitment; data collection; analysis; minimising/investigating the impact of bias; and how open-cohort designs might address or present CRT design challenges. Open-cohort designs were felt to provide a solution for some of the challenges current CRT designs present in some settings. CONCLUSIONS: Open-cohort CRT designs hold promise for addressing the challenges associated with standard CRT designs. Research is needed to provide clarity around definition and guidance on application.</p

Staff experiences of implementing Dementia Care Mapping to improve the quality of dementia care in care homes: a qualitative process evaluation

Background Dementia Care Mapping™ (DCM) is a widely used, staff-led, psychosocial intervention to support the implementation of person-centred care. Efficacy evaluations in care homes have produced mixed outcomes, with implementation problems identified. Understanding the experiences of staff trained to lead DCM implementation is crucial to understanding implementation challenges, yet this has rarely been formally explored. This study aimed to examine the experiences of care home staff trained to lead DCM implementation, within a large cluster randomised controlled trial. Methods Process evaluation including, semi-structured interviews with 27 trained mappers from 16 intervention allocated care homes. Data were analysed using template variant of thematic analysis. Results Three main themes were identified 1) Preparedness to lead - While mappers overwhelmingly enjoyed DCM training, many did not have the personal attributes required to lead practice change and felt DCM training did not adequately equip them to implement it in practice. For many their expectations of the mapper role at recruitment contrasted with the reality once they began to attempt implementation; 2) Transferring knowledge into practice – Due to the complex nature of DCM, developing mastery required regular practice of DCM skills, which was difficult to achieve within available time and resources. Gaining engagement of and transferring learning to the wider staff team was challenging, with benefits of DCM largely limited to the mappers themselves, rather than realised at a care home level; and 3) Sustaining DCM - This required a perception of DCM as beneficial, allocation of adequate resources and support for the process which was often not able to be provided, for the mapper role to fit with the staff member’s usual duties and for DCM to fit with the home’s ethos and future plans for care. Conclusions Many care homes may not have staff with the requisite skills to lead practice change using DCM, or the requisite staffing, resources or leadership support required for sustainable implementation. Adaptations to the DCM tool, process and training may be required to reduce its complexity and burden and increase chances of implementation success. Alternatively, models of implementation not reliant on care home staff may be required

Barriers and facilitators to implementing dementia care mapping in care homes: results from the DCM™ EPIC trial process evaluation

Background Psychosocial person-centred interventions are considered best practice for addressing complex behaviours and care needs such as agitation and anxiety, and for improving the quality of life of people with dementia in care homes. Dementia Care Mapping (DCM™) is an established practice development tool and process aimed to help care home staff deliver more person-centred care. To date, few studies have evaluated the efficacy of DCM™ and have found mixed results. These results are suggested to be the outcome of intervention implementation, which may be impacted by a range of factors. This study reports the barriers and facilitators to DCM™ implementation in care homes found during the process evaluation conducted as part of a randomized controlled trial. Methods Eighteen of the 31 DCM™ intervention care homes were recruited to participate in the embedded process evaluation. Semi-structured interviews were conducted with 83 participants, comprising care home managers, trained DCM™ users (mappers), expert external mappers, staff members, relatives, and residents. Results Barriers and facilitators to DCM™ implementation were found at the mapper level (e.g. motivation and confidence), the DCM™ intervention level (e.g. understanding of DCM™) and the care home level (e.g. staffing issues, manager support). Further barriers caused by the burden of trial participation were also identified (e.g. additional paperwork). Conclusions Implementing DCM™ is complex and a greater consideration of potential barriers and facilitators in planning future studies and in practice could help improve implementation

How should we capture health state utility in dementia? Comparisons of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L.

Objective Investigate the construct validity, criterion validity and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L. Methods The analysis used a three-wave, individual-level dataset of 1,004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal- and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, as well as other non-utility cognitive (FAST, CDR, CMAI) and HRQOL measures (QOL-AD-NH, QUALID). Construct validity, criterion validity and responsiveness was assessed using correlation, Bland-Altman plots and panel data regression models. Results Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR and CMAI, but did capture the resident’s own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than self-completed EQ-5D-5L. These formal- and informal-carer proxy-measures also better reflected changes in FAST, CDR and CMAI but didn’t capture the resident’s own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxies own view of the resident’s HRQOL (QUALID). This indicates discrepancies between a proxies-view and residents-view of the impact tangible declines in health, cognition or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, EQ5D-5L-proxy was typically more responsive than DEMQOL-Proxy-U to changes in CDR, FAST and CMAI, indicating that use of DEMQOL-Proxy-U is not always justified. Conclusion Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care

Decision-making in cancer care for people living with dementia

Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. Methods: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Results: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. Conclusions: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required